As parents, we know our son, now fourteen, the best. And my husband and I had expected that at school, they could get to know him well too. We hoped that teachers could discover his potential and strengths, that they might stimulate his interest in studying and motivate him to learn. In reality, everything is different…
At the age of six, my son was diagnosed with hereditary angioedema (HAE). He inherited it from his father, my husband. His two elder brothers do not suffer from this disease. We have heard his question: ‘Why is it me who has to have it?’ countless times. He has also been hospitalized in the intensive care unit with facial swellings multiple times. In addition, he suffers from frequent attacks – swellings in the abdomen and related nausea due to which he is one of the ‘record holders’ for missed classes.
When he has attacks, he vomits, lies in bed, or sleeps, but doesn’t study. As soon as possible, he returns to school. But teachers examine him right after his return in the old and new curriculum, and sometimes he immediately needs to sit down for tests, without having enough time to cover the topics and to catch up. So what happened repeatedly was that he got a bad grade, gave up, and lost motivation for any further studying.
My husband and I didn’t do much about it until the seventh grade. We tried to explain at school that the frequent absences were justified. We also repetitively “complained” about marks from examinations and tests done on the very first day after returning to school. We wanted to have at least curriculum plans so that we would know what he had to learn, when, and for which subject. We didn’t get them. Afterward, we asked for an individualized learning plan because of frequent absences. We did it so that both we and our son could get oriented and keep track of the curriculum. We were referred to a pedagogical-psychological counseling center. And that’s where we have ended up so far, with no success.
Education is our top priority. That’s why we study with our son a lot at home and he also has tutoring sessions. He is good at foreign languages, and he enjoys IT. Thanks to HAE Junior, he has already completed a language course, and now he is looking forward to a programming course. We believe in his potential and skills. We are sorry that some teachers did not discover them, or they pigeonholed him as a “truant”, “slacker”, but we believe that we will make it together. And that, despite HAE, our son will eventually enroll at a good high school. Keep your fingers crossed for him. He will need it, especially now in the eighth and later in the ninth grade.
– Mrs. M., mother of a teenage patient with HAE
